A Road Less Travelled – Living with Neuroendocrine Cancer

Birthdays and Consultations

On the 24th January I celebrated my birthday, my 54th year on this earth my first one with cancer, and as a grandma; and on the day itself it felt no different to any other, which was good. In fact I had a lovely time, out for a meal with family and friends the night before and lots of cards and presents on the day. I can happily say that I was spoilt rotten.

Thinking back four years, I was dreading the big 5 0, not the actual birthday itself, just the large number that was attached to it. There was nothing to worry about though, it wasn’t going to change things and it didn’t, life carried on as normal, I felt no different, looked no different and acted no differently either!! To a certain extent though this felt like another big birthday, the last six months has seen a lot of change, and a few days before my birthday I received the news that their was evidence of progression with my condition, so I was to be honest feeling a bit down. However I was determined to not let it affect our night out, and it didn’t, all discussion about it was kept to a minimum, we just ate good food, drank good wine and laughed a lot.

It has been a bit of a strange time though the last couple of weeks, it felt a bit like having being hurled back to June 2015, when I first got my diagnosis. Especially the bit between diagnosis and consequential MRI results. I was in suspended animation again, but unlike last time I wasn’t communicating much with the outside world or reading much. I had been sucked dry of all energy or motivation whilst I waited for my referral and consultation appointment to be confirmed. I think a form of self protection kicks in, I knew I had no control over what would happen next, so there was no point thinking to hard about it. In effect I stopped thinking at all

On the 3rd February my husband Ade and I went to the Christie in Manchester and met with my new consultant, Dr Richard Hubner, and my specialist nurse Sharon, and we had what I would describe as a positive meeting. They were very friendly and open, and I learnt a lot more about my personal circumstances in that hour than I had learnt about it in the past 7 months. Dr Hubner confirmed that there is progression in existing lesions in the small intestine, and suggestions of new ones in the liver, which will all be fully confirmed following the Multidisciplinary Team (MDT) review.

Nothing was off the agenda, I could leave my questions to the end or ask as he went along. Lots of questions were being asked on both sides with the result being that I was asked to leave my questions to the end, which gave us all a bit of a giggle!! My understanding of what is going on with me is now so much better, it always amazes me how a simple conversation can make things a lot clearer. I now felt that I was in the right place, they definitely know their stuff. I cannot fault Stoke though, they have done their best based on what they knew and understood about my cancer, they were always available and supportive.

Now for the technical bit. The MDT team are going to check all my images, and re-check my biopsy to confirm my percentile is correct. Bloods were also taken to check whether or not my tumour is functional, there are features that suggest that it is. They are checking carcinoid heart disease, pancreatic enzyme insuffiency (which also involves the delightful task of providing a stool sample!) as there is evidence to indicate that this may be the case. If so that will require me to take Creon too, that I have read about… Now I know this may seem like a small thing, but one of the best bits for me is that I no longer need to do the 24 hour urine collection every 3 months, they can check 5HIAA via a blood test. I always felt like I was under house arrest on those days.

My octreotide somatuline gel injection is to be increased to 120mg, and I am back there on Monday for a top up to last Tuesdays jab. This will take me up to 90mg for this month, with the highest dose to start in March. We were also told about the various interventions that are available depending on presentation and progression, however that is all for the future. Hopefully I will get an update of the MDT review in the next few weeks, so as I can start on the next part of my journey.

For now though I am pleased to say that I am now feeling happier and more positive again. I don’t know what bumps will be put before me on the road ahead, but as always I will deal with them as they arise. No point worrying about what I don’t know, until I know it.

good luck Kath. Interesting to see Christie’s doing serum 5HIAA too. An Echocardiogram is sensible too, make sure they repeat it annually. Sounds like you got a bit of a ‘NET MOT’ and of course you’re right about the worrying – no point in worrying about something you have no control over, particularly if you don’t now precisely what it is to be worried about. Take care.

Eventually managed to get more detail about you via FB (don’t think I’ll ever find my way around FB, as never quite understood it like ClearQuest!). Sorry to hear the latest news and all so close to birthday. In UK now until at least 8th March. Dog walking twice a day, housework, cooking and taxi service back and to the hospital. Everything very complicated with our friends mix of lung tumour, recurring chest infection and wife’s knee replacement. Getting to know more about this new world you and Mike have been projected into, though! We get “passes out”, but waiting around at present to feel more confident that we can leave our friends “home alone”.
Definitely don’t like the weather. Angela said it was always grey when she came over. Now I know how she feels. It’s so positive to wake up almost each day to blue sky. We can manage the 40C+ for a month or two.

Clear quest, I still got calls myself for a good few years after moving on, it’s all JIRA now though. Which is good but not as good I’d say. Sounds like you have your hands full, it is a lot to deal with on so many fronts. I still have whatsapp if you do, so will send details via FB

The weather has been particularly miserable this year, damp, grey and no proper cold snap, so I am not surprised you are missing the sun.

Fingers crossed we manage to catch up, but don’t worry if you can’t, there will be other opportunities xx

Good!! wear the badge!! but I knew I would recognise you from the photos I have seen – yes, initially we had to buy a sat nav. and we always park in the car park near Oak road, but the multi storey normally has plenty of room – we are lucky, I have a blue badge, and Greg usually gets a space! yes, the roads are a nightmare sometimes – best to stop at John Lewis’s and have a cup of tea – usually need it for the loo anyway, especially if you have a CT scan and have the stuff in the water!!

John Lewis what a good idea😃 so you go up the A34, I prefer that to the m6, it could prove expensive though. We got free parking as I was able to use my private healthcare through work, thought I might as well make the most of it whilst it’s still available😉

As for recognising me, the hair is the thing to look for, Hubby always says that when it is straightened I am harder to find!!

Hi Kath, so pleased your day went well at the Christie – they are really excellent, and cover everything, I did look for you, because my morning appointment went well into the afternoon – my injection has been increased too, so my nurse, Helen [who is absolutely wonderful] could’t pre-book it and the waiting time for the prescription was very long, so we had lunch in the cafe, and by the time we got the injection, nearly everyone had gone home! but anyway, think we got away around 3:30